Dialogue Volume 14 Issue 1 2018 - Page 33

“Document, document, document. Simply write down exactly what you do and why. Show that you are applying clinical judgment to the situation. That is all there is to it.” time start to recede. It is very easy for disease, and injury to lead to isolation and an inability or desire to contribute to the world around us. Finding physicians empathetic to the pain that you suffer has been frustrating. What kind of reactions were you encountering? The problem with having a chronic illness is that I will never get better. I never see a physician with the expectation of a cure, but rather for some idea that might help to make things better. However, many physicians expect patients to get better because of their input. When they don’t, the doctor feels less compe- tent and that is displaced onto the patient. I once had a neurologist tell me that my problems were psychiat- ric in spite of hard clinical and EMG findings. What was my response? I actually said, “Great, because that means I can get better and it means I can stop taking these poisons.” I stopped taking my immunosuppres- sants and within three months, I had a serious attack and demyelinated my L5 nerve root. It was horribly painful and disabling. I ended up being measured for a wheelchair. What was it about certain doctors that made you want to continue in their care? Given the relative rarity of my diseases, I have been very fortunate to find a small handful of physicians that I trust and that I have worked with, some for more than 20 years. They listen, do not judge, think, confess when they do not know something and find out what they do not know. They have always been there for me in my worst of times and have never become frustrated because I get worse, not better. They also respect the fact that I know more about my diseases than they do, for the most part. They listen to what I have to say, and include it in the clinical think- ing process. You have said that this opioid crisis has created a situation of under treatment. Can you elaborate on what you are seeing in your pain clinic? The crisis is because of what physicians fear is over treatment and they respond by creating a situation of under treatment. Let me explain. Prior to the most recent guidelines, the recommended upper level of opioid dosing for treating chronic pain was 200 mg of morphine equivalent. With the new guidelines, it dropped to 50 mg preferred and 90 mg, if necessary. However, many patients are still on doses of opioid above the new guidelines because they started the medications before the guidelines were created. Now, prescribing physicians are concerned that the dose is too high. In some cases, the physician becomes con- cerned that these higher doses will bring them under the scrutiny of the College. They tell the patient the dose must be lowered and they proceed, regardless of whether the patient agrees and sometimes regardless of the impact the change in dose is having on a patient’s function. In response to this ‘crisis’, patients are reporting to me that they do not know what to do. They recognize that they must comply with their physician or their medica- tion will be discontinued and then they will be in worse trouble than they are in already. Many of them report that because of the dose reduction, they cannot function. They feel abandoned by their physician because the deci- sion to lower the dose was done without their agreement. They feel forced to do something and they feel that they have no alternatives. A couple of my patients have re- ported that this situation has stimulated suicidal thoughts because they cannot think of another way out. ISSUE 1, 2018 DIALOGUE 33